Suzette's Story: The Journey Is Everything

Suzette's book is filled with lessons learned during her cancer journey.

“I'm an introvert.”

So says a soft-spoken, smiling Suzette Hodnett, only slightly bemused when presented with so many facts to the contrary:

She's a trained therapist, a tai chi instructor in considerable demand and an artist known for bold, fanciful, oversized, uber-metallic creations.

She's a Stage 4 cancer survivor who captivated every medical professional who operated on her, medicated her, irradiated her or rehabbed her.

She was the inspiration for and beneficiary of TeamSuzette, a grassroots support community numbering in the hundreds and assembled by family and friends.

And Hodnett is the author of "The Journey is Everything: Saying Yes to Cancer" (available on Amazon and at Hodnett’s website), a thoughtful, emotional, spiritual and decidedly outward-reaching “how-to-get-through-it” book. It's her way, she says, of “giving back.”

At first glance there's little to suggest “change” around Hodnett's home in Whittier, California. It's more a feeling of calm, stability and continuity. A baby grand piano – her mother's – occupies one corner. Artworks – not hers, but by her artist friends (“We trade a lot”) – cover the walls. As for Hodnett herself, she is slim and serene in turtleneck, jeans and stylish curly hair.

Only when you look closer do you begin to understand.

Suzette, framed by her art, talks about her book to a group of onlookers

Hodnett's smile is a half-smile. The right corner of her mouth does not move and her right eye does not blink, both the result of surgery that severed facial nerves. There are long scars. Her right ear is missing.

Seated in her garden, carefully positioned under an SPF-50 umbrella, she explains:

“Back in 2013, while doing tai chi, I noticed what felt like an enlarged lymph node. It turned out to be Stage 3 follicular lymphoma, slow growing but incurable. Many patients who have it choose to 'watch and wait.' That's what I decided to do.”

A year later, more tumors appeared all over Hodnett’s head, neck and the base of her skull – and they were growing rapidly. What doctors had thought was a particularly aggressive form of lymphoma, instead was advanced metastasized squamous cell cancer, Stage 4.

Thankfully, due to the Affordable Care Act, Hodnett was able to have her care transferred to City of Hope.

City of Hope's tumor board felt that surgery offered the best chance for recovery. But it wasn't going to be easy. And time was running out.

‘We Were Quite Concerned’

The surgery was scheduled for May 2014. However, the disease was spreading so quickly that Hodnett was now in constant pain and could barely speak. It was decided to move up the operation by several weeks.

“That may have saved my life,” she said.

“We were quite concerned at the aggressive nature of her tumor,” said Robert S. Kang, M.D., M.P.H. “It had grown quite large in a very short time, to the point that her facial nerve was paralyzed between the time we saw her in clinic and the day of surgery.”

A team of three surgeons labored for 14 hours to remove the cancer and reconstruct the damaged areas as best they could. In "The Journey Is Everything," Hodnett describes her new reality, hours after waking up:

“I am carved and gutted like a Halloween pumpkin. Flaps of fifty lymph nodes have been removed. My jugular vein is cut, my TMJ bone is spliced, my muscles are diced, my face is half-paralyzed and my spinal accessory nerve is severed. I'm missing an ear like Van Gogh. My right arm is soon to be in a sling, and my eye is covered by a patch. I'm embroidered like my grandmother's favorite quilt, with a large skin graft from my thigh covering the side of my face, neck and lower skull, and I have a partially shaved head. The muscle and nerve pain seems never-ending.”

When Kang stopped by to see her, Hodnett silently reached out with her one good arm, and pulled him close.

She kissed him.

“It felt great!” recalls Kang. “It put a big smile on all our faces!”

Here and Now

Hodnett's cancer journey was far from over. Over the next year, she endured long stretches of radiation, chemotherapy, often-excruciating physical and occupational therapy, and eight additional surgeries to remove cancer cells which continued to assert themselves.

Every cancer patient, when faced with such a difficult road ahead, reacts differently. Some steel themselves, narrow their eyes, set their jaws and push on, focused on “tomorrow.” Others may throw up their hands and say, “I can't do this!” only to be carried through each day's ordeal with support from loved ones.

For Hodnett, the way forward was rooted in the here and now. She resolved to live in the present: to extract meaning, peace and gratitude out of every single moment of every single day, no matter how challenging that might be.

“It doesn't mean you're never scared, never sad, frustrated or confused,” she insists. “Those are normal emotions. But they are part of the journey. They don't define us. I would never tell myself, 'Don't be scared.' Instead I ask, 'What can I get from this moment? What's true about this moment?' If I'm in pain right now, fine. I don't project it forward. Tomorrow, I'll be in a different place. If I can barely move my arm today, OK. That's today. Tomorrow, we'll see. That's how you embrace the here and now, give your body positive cues, and turn baby steps into leaps!”

And that, said Hodnett, is what saying “yes” means.

“Someone who says “no” is saying, 'I am in horrible pain. This is miserable. I'll never be the same again.' When you change that to saying “yes,” you're now saying, ‘This is another opportunity to learn and grow. Life is a continuous flow.'

“It's the difference between feeling pain ... and suffering.”

Illness did not bring on this revelation. Hodnett says she's been a “moment-to-moment” person ever since she was a “teenage surfer girl,” coping with a “crazy, turbulent” home life, and later traveling around in a VW bus and reading "Man's Search for Meaning," the memoir by psychiatrist and Nazi concentration camp survivor Viktor Frankl.

“Frankl's point,” she said, “was that, no matter what happens, it's our choice how to respond.”

Twenty years of tai chi training also helped. Often called “stillness in motion,” tai chi's discipline guided Hodnett to what she calls “the calm within cancer,” a concept she teaches to other patients through her classes and to a wider community through her blog.

Spreading the Word

Hodnett’s insights impressed – and inspired – even her own caregivers.

Suzette (right) with her sister, celebrating a clear PET scan during sunset.

“I found I was using present-moment awareness to improve my therapeutic relationships,” said occupational therapist Belinda Torrez, who worked with Hodnett after surgery, adding, “She was patient, accepting that her body was miraculously healing and visualizing the destruction of the cancer as it was replaced with healthy cells.”

“Her attitude is memorable to me,” said Kang. “She has a positive energy, and is full of gratitude and peace, and it is contagious.”

“As a therapist,” said City of Hope physical therapist Ron Vanderbrink, “it was my honor to have her as my patient.”

These days, Hodnett is happily cancer free, growing stronger and resuming much of her teaching schedule. Despite her severed spinal accessory nerve, she has been able, with physical therapy and adaptations, to return to her life as a professional artist, now with added heart and soul. She recently exhibited all the art she created during her healing journey in a one-woman gallery show entitled, the “Journey Is Everything.”

in the past year, her original slow-growing follicular lymphoma transformed into an aggressive Stage 4 diagnosis and now, once again after treatment (six months of chemo), she is in the clear.

She continues to visit City of Hope for follow-up visits every few months. She can't say enough about the people there.

“Their incredible compassion and expertise played a big role in my healing,” she said. “I wouldn't be alive without them.”

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